I Have A Chronic Illness – But Doctors Told Me It Was Anxiety

We'd moved to Portugal when I was 12 and it was that summer I passed out for the first time. I was sprinting in PE in the 40 degree Portuguese heat when everything went dark, I couldn’t hear anything and I remember saying to my PE teacher, "I think I'm dying. My mum's gonna be really upset." He assured me I wasn’t dying and then I fainted and woke up at the nurse's office.

We’d already been to the doctor before – my mum had noticed I had trouble breathing and I’d get very tired – but they said I was fine because blood tests didn’t show anything wrong. But when we went after I fainted my mum was hoping for some kind of answer. Instead the doctor said, "She's fine. She's entering puberty. It's a hormonal thing. This happens to young girls – they faint." My mum knew from her life that this wasn’t just a 'part' of puberty but didn’t have any option but to accept what he said. We lived in quite an under-populated area and there wasn't really much access to any medical care.

I continued to see this doctor for six or seven years until I moved and during that time I started fainting constantly. Every few days I'd pass out. By the time I was 16, I left school for a year because I became too unwell and I had to lie down the whole time. At that stage, the doctor started to question me and said that my mum had Munchausen syndrome by proxy. This led to my school trying to expel me. They sent me an expulsion letter saying that I hadn't shown up to school for no reason – that this was in my head.

I managed to get a bit better and finish school before moving to London. I started seeing more doctors because I’d developed more symptoms as well as fainting and trouble breathing: I had a headache, was tired, sweating a lot and throwing up too. One doctor said I was asthmatic but that didn’t make sense. Then others said a lot of my symptoms were similar to anxiety and I was diagnosed with an anxiety disorder.

My mental health spiralled out of control: they were saying that this is in my head so [I thought] it must be in my head. I almost started playing the part of someone who had a really bad mental health problem as well as developing really bad mental health problems. It was then that my insides – my stomach and my colon – basically stopped working, at which point I developed an atypical eating disorder. It felt like I finally had an answer to what was going on and I started eating disorder treatment. It was there that I met somebody whose mum had PoTS and finally discovered my diagnosis by complete accident.

I was still being completely dismissed by GPs at that time, except for one GP who wanted to send me to a diagnostician. So I googled this PoTS condition – not because I thought it sounded like me but because I was curious – and I found that I ticked off all 12 potential symptoms. It recommended you go to the GP if you have three.

I was so traumatised by that stage that I was terrified the next GP I spoke to would think I was diagnosis shopping and dismiss me again. My mum had to say the words out loud – luckily the GP agreed that it sounded like what I had and referred me to the London PoTS specialist who's a cardiologist. He was pretty certain I had it but had to confirm so he booked me in for emergency testing and, sure enough, within a couple of days I was diagnosed. I was 23.

My mental health has improved so dramatically since my diagnosis. I found out I have hypermobile Ehlers-Danlos syndrome too, which they think could be the cause of PoTS. I still have moments where I question it and ask myself, Do I really have anything wrong with me? But other than that it's improved so much. Now I actually understand what’s happening and have access to the care that I need. I'm under the care of about five different teams now, one for each system in the body that doesn't work properly: cardiology who prescribe the medication for fainting and blood pressure; urogynaecology for my bladder retention issues; gastroenterology for my digestive issues; neurology for the headaches; and orthopaedics for my joints and bones.

Physically, I do still struggle but with the medication and the correct treatment, my conditions are much better controlled. I take medication two to three times daily, go into the hospital about once a week, and I follow a high salt diet which helps with PoTS symptoms. A lot of the treatment is corrective – I can't empty my bladder properly because of my PoTS and I get a lot of infections. Before my diagnosis I kept saying that I had urinary symptoms, and they said that was anxiety. Now I've been left with bad infections that need to be treated. Likewise my gastroenterology treatment is corrective. But I'm much more able to do things independently. I've gone back to university and I work part-time. 

I believe the way I was treated was massively shaped by my gender. My pain and my symptoms really were dismissed a lot and I think that's directly linked to me being a woman – when the men in my family go in for treatment, they're taken seriously a lot sooner. Even being told that fainting was what young girls and young women did. It was as though to them I was fainting because I was hysterical, or that girls are so precious that they faint at the sight of anything. It was absurd. All my friends who have PoTS have been misdiagnosed. It's also taken them about 10 years from the onset of symptoms to get a diagnosis. The majority of them have left education, work, developed mental health problems as a result. There's also the fact that even with conditions that affect women more, clinical trials or medical research focuses mainly on male patients. If you have a menstrual cycle that's a write-off, apparently. How is focusing on cisgender men going to help when this mainly affects cisgender women?

Then there’s the fact that my symptoms get a lot worse during my period. I get weaker, I get more lightheaded, I faint more, I get more headaches and I feel more tired. Before my diagnosis that’s just what I thought periods were like. I’m always dreading those six days a month – I've tried lots of different things to stop my periods but nothing I tried really helped.

The pandemic has been quite positive in some ways because it created a lot more awareness. Treatment has been delayed, which has been really frustrating, and I was completely isolated in a hospital room for a week with a postoperative infection, which was hard. But I think the awareness this has brought to the experiences of people with chronic illnesses and disabilities is so important – it’s helped people realise that they can be more flexible with working arrangements and study arrangements and actually accommodate us. The theory that long COVID symptoms are actually PoTS symptoms will create a lot more awareness too. It’s a shame that it didn't happen before because we've always existed and we weren't really paid attention to, but I think it will help with the diagnosis and maybe getting better treatment.

If there’s one thing I want from all this it’s for people to really take others seriously and really listen to what they're saying pre-diagnosis. The condition is just as valid pre-diagnosis yet people don't get the recognition they need if they don't have a word to explain the symptoms they’re presenting. I think that particularly applies to women who are chronically ill. You shouldn't have to fight for 10, 11, 12 years to be listened to.